1 year of weird symptoms...Possibly Lyme?
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Hello all,
About a year ago this July, I started experiencing what would eventually become a long list of symptoms and can say with some confidence that this has been one of the worst years of my life.
It all started with some eye discomfort, as if I had some type of burning conjunctivitis or something. Then with that came a sort of hazy, brain-foggy type feeling, and then there was a week or so towards the end of July where I felt absolutely awful: absolutely no energy, achy muscles, muscle twitching, flu-like symptoms, etc. I missed like 6 days of work, but eventually felt "well" enough to at least drag myself to work.
A couple of weeks more of this brain fog, sleep problems, shortness of breath had me extremely worried that I had some kind of brain tumor or something, and I eventually snapped and just went in to the emergency room to figure out what was going on. That night, I had a head/neck CT, and EKG, labs to check for heart issues, and many more, but the only thing that was abnormal was my TSH. This is a known issue for mez and I've been on levothyroxine for it for 6-ish years now. They told me it was probably my thyroid and sent me home. Later that same night, I woke up to feed the cat and could barely walk back to the bed. When I got there, my heart was racing out of control and I couldn't stop it for several minutes. I ended up back in the ER and they did another EKG and checked for West Nile because I had been on a week-long camping trip in Colorado a few weeks prior. They sent me home with a 48-hour holter monitor.
In the following months, I saw over a dozen doctors: endocrinologist, neurologist, ear nose and throat, rheumatologist, genetic counselor, psychiatrist, etc and had tons of blood work done along with 2 MRIs, an EMG, and nerve conduction test. All unremarkable. I did have an elevated CK level, which had me very worried about muscular dystrophy, but numerous doctors have assured me that that was due to the weight training I had done a day or two before the blood draw. $6,000+ later and I still have no answers.
I've had so many weird symptoms over the course of the last year (muscle weakness, muscle twitching, headaches, burning eyes, aching hands/feet/ankles/wrists, sore neck, apparent thinning of forearms/hands/feet, ability to see veins through skin more than before, trouble sleeping, extreme grogginess upon waking, periods of shortness of breath where I can't get a full breath, jaw pain and jaw/facial muscle fatigue when chewing/eating/smiling/talking, and many more) but the symptoms that turned me on to Lyme was the significant skin sensitivity in my arms and legs. There have been periods where my forearms and legs are so tender to anything rubbing on or touching them: long sleeves and pants, bed sheets, cuffs of jackets and coats, etc. It's oddly one of the worst symptoms because it's difficult to avoid. Anyway, I googled this (as I have been doing with my symptoms all year), and saw someone on a Lyme board complaining of the same issue. I looked into Lyme more and couldn't help but notice quite a lot of similarities to what I've been going through (an initial acute bout of flu-like symptoms followed by a long list of ebbing and flowing other symptoms. Does this sound anything at all like any of your experiences? I only wonder because I DID spend a week in Colorado a few weeks prior to my initial onset of whatever it is that's making me feel this way.
I no longer have the extreme fatigue I had initially, but Im certainly no ball of energy. Over the last few months, I've begun to reintroduce exercise (I was scared to due to fears of some myopathy or dystrophy) and find that I can do some extended cardio (ride a bike at moderate intensity for 30-45 minutes, but I'm definitely not where I was strength wise. I've always been a fairly muscular guy, but it's like I have no stamina in that department anymore. Even doing things around the house (vacuuming, using an electric mixer to make cookies, etc.) will tire my arms and shoulders out quickly. My hands and feet are so tender that high impact exercise like running hurts my feet. It's almost like they're wasting away or that there's not as much fat or tissue there for cushioning anymore. Same in my hands. Does thiss sound anything like Lyme?
I'm gathering that getting this diagnosed/ruled out is a bit of a nightmare. What do I ask my doctor? I've had such terrible luck with doctors throughout this experience. I can tell that many don't believe something is wrong, but unfortunately those that are sympathetic aren't really in a position to help because their specialty has ruled things out. One doctor was actually confrontational and we ended up selling at each other. I'm so tired of not knowing what's going on with me, and it's starting to affect my mood/behaviors and how I look at life. Any help would be greatly appreciated.
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